Bonding in a New Normal, by Kathryn Anne Casey

There was one difficult week when I breastfed my eldest. The rest fell in line with the bond of sweet suckling in their first year, co-sleeping and snuggling, easy to pack up and run errands because their food source was always at their side. I gazed at my third born, savoring the moments, proud that she rejected the bottle and would take only me, imagining the assertive female I hoped to raise. 

Pregnant with my fourth-born, he was diagnosed prenatally with a cleft lip and palate. It would mean surgeries and it would mean no nursing. How would I bond with my child?

We bought special bottles. I rented the breast pump with his baptism money. The painful process began. Through long nights, I fed him every two or three hours and pumped in between to keep up the supply.

He knew what to do, chomped like a champ on the cleft bottle, but threw up so often and gained nary an ounce, it was clear something was wrong. In the dark, propped up by pillows in a rocking chair, my sick infant my lap, I wept long tears over the heartache of it all. 

He was admitted to the hospital when he was two months old, weighing less than he did at birth.

Eleven days later, we returned home with a tube traveling from his nose to his stomach. Still, he did not gain weight. We were back at it again.

At seven months (mostly spent in this hospital), Peter was diagnosed with a rare genetic disorder called SPINT2. Along obscuring the vision of his left eye with a coloboma, causing a midline cleft lip and palate, it means he can not hold his salt. Rather than discarding the excess and using the necessary amounts for nutrition, like the rest of us, he constantly loses sodium and faces dangerous electrolyte imbalances if not treated. Peter needs high enough levels of sodium to keep those ‘lytes in range. 

Between his failure to thrive, frequent vomiting, and cleft surgeries, Peter developed an oral aversion. He could eat, but with all that trauma, he chooses not to. To save him in those early days, when no NG, OG or specialty bottle feeds would work, the doctors surgically inserted a permanent central-line catheter called a Broviac and he began his daily doses of TPN (total parenteral nutrition) administered over a 20-hour cycle (back then) and now, three years later, a 14-hour cycle.

The line enters his body in his chest, is tunneled under the skin and enters his superior vena cava. The TPN is delivered right above his heart. The heart draws it in and then distributes it throughout his body. My son is alive because of medical technology.

We used a G-tube to administer continuous feeds to his stomach hoping to maintain his ability to eat with his gut, wrangling the bag to help the gravity, priming out air when we failed. It worked for a time until it didn’t. The day came when we stopped feeding him altogether.

I once questioned how I could bond with my child if I could not nurse him. Then I faced not feeding him at all. He had grown inside me. My body was made to nourish him. Yet what I had was not enough. It could not make him grow. 

I stopped pumping when he was 8 months old. The freezer supply lasted a few more months. Then it was done. And we were done. But Peter was not done. With the TPN, he grew and grew. He turned the corner. He left the hospital. He smiled. He laughed. He thrived.

I held him when he was sick as we moved back and forth from hospital to home. We walked the floor of the hospital room as I sang “Be Thou My Vision” and the only Christmas hymns I could remember. 

After so many months of health, his blood levels dropped inexplicably. They gave him four plasma transfusions and two red blood cell transfusions. I stood by his crib in the Pediatric ICU, stroking his arm as he lay listless in the elevated bed surrounded by medical equipment, the intermittent beeping of his beating heart and steady levels. He was my everything. Trembling, I asked his case manager if they would tell me if I needed to call my husband to come, in case this was the end. 

When Peter sat up that evening, the threat of loss subsided, the waves calmed. I beheld a vision I had never before experienced. The year before when they rushed him into the PICU, I felt helpless, pushed aside, afraid to hold my baby swaddled with tubes and wires. This time, I was there. I touched his arm. I stayed by his side.

We hold visions of what it means to bond with our children: carrying them to term, a vaginal birth, early days at home, breastfeeding, picking clothes and dressing those uncooperative newborn limbs, celebrating the milestones. When that vision moves aside to make room for the reality of a new normal, the loss is keenly felt. But what remains, when we open our hearts to receive the sacrament of the moment, when we embrace not only our physical ache to physically mother our children, but accept also the power of the spiritual bond, the love of the little way of medical care, we enter into a mystery greater than we can comprehend here on earth. We are Mary of the Presentation, we are Mary at the foot of the Cross, we are Mary of the Ascension, growing ever closer spiritually, despite the physical differences and distances. 

We walked the floors. I stroked his hand. He raced with his medical pole. His life and nutrition look different, but it is a life, and a life lived to the full, uncovering in its daily care the very heart of the mystery of God.

Kathryn is a Northern Californian wife, mother of five children on earth and three in Heaven, newspaper reporter, columnist and author of Journey in Love: A Catholic Mother’s Prayers after Prenatal Diagnosis. She splits her time reading, writing, homeschooling, attending to her Peter’s medical needs, and shuttling him to appointments at University of California San Francisco while listening to her favorite podcasts. To read more of her writing, go to www.kathrynannecasey.com.